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The Mental Health Challenge of Inhibitors

People with bleeding disorders who also have an inhibitor have to pay extra attention to their health, and mental health is no exception. Although research is limited, having an inhibitor may increase the risk of depression and anxiety.

The links between mental health and inhibitors are complex and interwoven. Treating bleeds is more complicated when a person has an inhibitor, and these bleeds are harder to control, explains Sue du Treil, PhD, LCSW, retired assistant professor of clinical medicine at Tulane University School of Medicine and retired social worker at the Louisiana Center for Bleeding and Clotting Disorders in New Orleans.

Bleeds are, of course, painful in the moment. Over time, frequent bleeds can lead to arthritic joints, chronic pain, and loss of mobility and independence. These factors can lower self-esteem and increase depression.

When patients have low self-esteem, they tend not to stick to treatment plans, says du Treil. “Self-esteem impacts the ability to adhere,” she says. Furthermore, not following treatment recommendations can have grave consequences for people with inhibitors. “If patients with inhibitors don’t adhere, it is truly much worse than for patients that don’t have inhibitors and don’t adhere. Skipping infusions impacts the efficacy of the treatment and increases the cost to an already very costly intervention.”

Clearly, maintaining or improving one’s emotional health is vital for people with inhibitors. Fortunately, there are several strategies that work, du Treil says. “Self-esteem can be changed,” she stresses.

Cognitive behavioral therapy (CBT) is one effective method. In CBT, a person learns how to reframe negative thoughts into a more positive perspective. “Because thought is what activates feelings, they literally change their feelings,” du Treil says.

Another tactic to improve emotional well-being is called the strengths perspective. “We believe people have inner strength. They have resources,” du Treil says. She has worked with many patients to identify those strengths, such as extended family, social connections and emotional resources within themselves, that can see them through psychological challenges.

Others have used meditation, self-hypnosis, music therapy and aromatherapy to manage pain and other challenges, du Treil says.

She adds that parents and loved ones of people with inhibitors can help bolster their self-esteem by pointing out when they do something well. Additionally, using thoughtful touch, such as an arm on their shoulder to show support, may seem small, but it can have a big impact. “It lets someone know that you love them and care about what they’re doing,” du Treil says.